Baby Led Weaning with special diet needs

So my 6mo dd has PKU, her protein intake has to be carefully monitored. We measure her food before and after eating and calculate how much "phe" she ate. The companies have an analysis of how much phe is in each gram of food and everything. I have always been interested in blw, but I'm so afraid she won't get the right amount of food! I know part of blw is not worrying so much about what they eat, but I really do have to worry about how much she eats! Those of you that do this, do you think it could still work for us?

So my 6mo dd has PKU, her protein intake has to be carefully monitored. We measure her food before and after eating and calculate how much "phe" she ate. The companies have an analysis of how much phe is in each gram of food and everything. I have always been interested in blw, but I'm so afraid she won't get the right amount of food! I know part of blw is not worrying so much about what they eat, but I really do have to worry about how much she eats! Those of you that do this, do you think it could still work for us?

I'm not familiar with that condition... Does she need to have a certain amount of protein? Or a limited amount? I would discuss it with your ped and/ or a dietician. I think you said baby is 6 months? So from what ive read they still are not digesting a lot of food anyway (purees or whole foods) so I'm not sure how that effects it as her digestive track is just starting to digest food. But it's possible to weigh food before and after if you put down a mat to catch all droppings. If it's just a matter of adjusting milk intake depending on amount of food it's definitely doable... But you should talk with your dr about it. (eventually baby will have to eat whole foods anyway, so it seems to me like it'd work)

I'm not familiar with that condition... Does she need to have a certain amount of protein? Or a limited amount? I would discuss it with your ped and/ or a dietician. I think you said baby is 6 months? So from what ive read they still are not digesting a lot of food anyway (purees or whole foods) so I'm not sure how that effects it as her digestive track is just starting to digest food. But it's possible to weigh food before and after if you put down a mat to catch all droppings. If it's just a matter of adjusting milk intake depending on amount of food it's definitely doable... But you should talk with your dr about it. (eventually baby will have to eat whole foods anyway, so it seems to me like it'd work)

Yes, she will be able to get the treatments when she gets older, which is very exciting. As long as the enzyme is some functioning to some extent, she will be able to eat a relatively normal diet when she gets close to her teens.

Yes, she will be able to get the treatments when she gets older, which is very exciting. As long as the enzyme is some functioning to some extent, she will be able to eat a relatively normal diet when she gets close to her teens.

I would say yes talk with your geneticist and dietician. They wanted me to breastfeed my little girl for as long as possible. Both her and her brother have a fatty acid oxidation disorder and can't metabolize fats or fast. We accidentally weaned when her brother had an extended hospital stay the month she turned 3. Our dietician is a life saver when it comes to questions like this :)

I would say yes talk with your geneticist and dietician. They wanted me to breastfeed my little girl for as long as possible. Both her and her brother have a fatty acid oxidation disorder and can't metabolize fats or fast. We accidentally weaned when her brother had an extended hospital stay the month she turned 3. Our dietician is a life saver when it comes to questions like this :)

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